Comment by Georgie on March 14, 2013 at 12:36am

*sigh* I hear you.

I am an introvert so typically I won't open up to people....and this alopecia thing has been very difficult for me.

I shared my alopecia with two other Moms in my circle and sadly, it probably wasn't a good idea for me because after that they really didn't interact with anymore. I think I scared the first Mom. The second Mom was sharing the fact that her neighbor wore a wig...and then I tried to support the neighbor by bringing up my situation.

A handful of my friends know that I visit a dermatologist and that I lose hair. But they don't understand what it looks like. They think it is just shedding. At the moment I have two quarter size patches of hair missing right at the top of my head. I also have a white patch growing out on the back of my head that requires a lot of styling to lay flat and be concealed. Over the last several years I have been growing out my hair as long as I can to be all one length with no bangs. So, I can shift my part if I need to when my hair falls out. It has worked pretty well so far but my current patches of hair are becoming quite aggressive and seem to be resisting the kenalog injections.

People seem to not want to understand...or are scared.. esp.if you are a female or a child. It is sad. There have been times when I have wanted to tell people about my alopecia....but I can't. In this current phase of my life, I just want to blend in with everyone else. As a child I grew up motherless and that alone was isolating let alone this alopecia that I deal with.

That being said, I am sorry for what you had to go through. True friends don't mock...

Comment by baldisnotbeautiful on March 14, 2013 at 8:48am

I am curious,during last summer when all the mocking, teasing and threats of wig snatching were going on, where was your boyfriend? I am assuming you wouldn't be hanging out with his friends without him. One would hope if he was present during all the mocking he would have stood up for you.

Comment by MaddiiBoo on March 15, 2013 at 1:32pm

Ana, I think baldisnotbeautiful is just communicating that they don't feel beautiful bald.

All of us feel like that at times, right?

Comment by Sarah on March 15, 2013 at 7:42pm

In my experience it can always go a few ways,people can be very supportive, they can be extremely freaked out or it doesn't make a difference to them. I was first diagnosed with A.A when I was 2 years old so I have pretty much always had it. I suppose I have always been an educator about it when the situation called for it and what I realized now at 28 years old is my attitude has a lot to do with how people react to the news. As a child in school when kids would point out my bald spots which they would do over and over. They would literally be like your going bald, and my response was so what?? do you have a point and then usually they would ask why I would tell them and they would get over it, I was popular and well adjusted. Then grade 7 came, that year was horrifying that was the year I lost all of my hair on my head face and body, everyone made rude comments including some of my teachers. I felt broken. People made this a reason not to like me and it got to me. The following year my mom bought me a wig which was double taped and sewed on with any remaining hair, this year was worse than the year before, everyone new I was hiding something. It took me a long time to get over it. But now as an adult who over the last few years wear less and less of my wigs I realize it doesn't matter if I'm talking to small children, teenagers or adults it's my attitude that makes a difference, if I act embarrassed and ashamed (which a lot of us do) , people treat me like it's a bad thing, as if I should be embarrassed and ashamed, if I am down and depressed about it, people give me sympathy or treat me like I'm contagious but when I'm open and confident about it, people take it in a lot better. For me I no longer see this as a disease and I often explain that I'm an Alopecian and explain when it means to have Alopecia. I ease into it by saying it's no different than someone having a big nose or tall or short etc.just having something that makes them uniquely them, I tell them the pros of Alopecia instead the cons, never having to shave or not having to have a prickly woman in winter, kids is a little different I don't even explain Alopecia to small kids I just tell them this is how I am and that they can give my head a good luck rub if they want and if I am wearing a wig I tell them I wanted to dress up as if I was playing dress up. Just remember your now a part of a exclusive club, your H&H (hot and hairless). Good Luck to you!

Comment by Nani on March 18, 2013 at 12:29pm

I just want to hug you. How awful. They should be ashamed of themselves and I hope your boyfriend wasn't there bc I can't imagine that he would standby and watch and let them do that to you.

Comment by Camille Reinecker on March 18, 2013 at 4:07pm

People can be cruel. :( When I was ashamed of having this disease people could tell. I would let my negative thoughts show through my body and people perceived me as sick or easy to bully. Once I started believeing that I am worth everything and more, my walk changed, my face changed and so did the reactions of the people around me. I still get people staring at me but now they tell me how pretty I am or that they love the CHOICE I made to shave my head. Its important to me that they believe it is a choice to go bald because it really is I could hide it away by wearing a wig. It is my choice to believe in myself and show my confidence and love for myslef. People will react to that. So far almost all of my interations with people have been positive. :)

Comment by michelle on March 18, 2013 at 8:53pm

Its sad to hear that some of you have received such negative experiences from those that you know.

I do agree with Sarah. People will take their cue from you. Attitudes are contagious. If you are uncomfortable others will react in turn.
In addition, alepecia is a silent disease. I have Alopecia Universalis. This has only occured over the past 2 years. Except for those I know that have lost hair to chemo I didn't know anyone that had this disease...and yes it is a disease.

It has been quite the journey. I grieved and still am the loss of my hair. I don't love wigs and with my current treatment my scalp is sensitive. So I have become quite skilled with scarves and caps...Its my new funky look. My friends and family are their to support my in my sad alopecia days and their to celebrate my confidence.

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